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 Holy Cow - 3 new diagnoses today! 
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
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Yes. At 80 years of age, it would take him far longer to die from prostate cancer than from LBD, at any rate. His doctor agrees, and doesn't even order PSA tests any more.


Sat Apr 10, 2010 10:56 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3338
Location: Vermont
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My dad is extremely rigid. His lower jaw has been protruding almost 100% since last summer. Now his legs are just about permanently bent in a sitting position. His knees and ankles are almost impossible to bend to put him in a car. His arms are more flacid, very weak, and he can just barely hold a spoon. Just trying to get cole slaw on a fork or spoon was too much for him 2 days ago. I had to basically feed him yesterday. The neuro said "no more meds, he's already on a lot of stuff and there's nothing else that can be done to improve his muscle issues."
The ALF knows they now have to feed him. I bought some kids' bottles with flex straws, which makes it easier for him to drink. Since the bottles are kind of ergonomically shaped, they are much easier for him to hold and if it falls over, it doesn't spill. We had 3 lunches in a row with ice tea goblets landing in his lap.
Since I have been feeding him this week he's gained 2 lb. They are weighing him every other day now.
I am going back to VT tomorrow. Twice when he was lucid this week I asked if he would be amenable to moving to VT and he said "no way!". He was very adamant that moving to VT was not something he wanted to do. I told him at some point I may have to do that and he'd go by ambulance. He was not a happy camper.....


Sat Apr 10, 2010 2:53 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
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Bear in mind that, at that age, in that condition, they seldom WANT to do anything. Sometimes you just have to take the proverbial bull by the horns and do what you know is best. I know it's hard, reversing the parent-child role by making the tough decisions for him--just as it has been for me in a role reversal that still rubs my husband the wrong way at times. In other words, sometimes ya gotta do what ya gotta do. :wink:


Sat Apr 10, 2010 3:31 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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There are two CBD-related online support groups:

forum.psp.org --> the look-and-feel is very similar to the LBDA Forum; anyone can read; you have to be a member to post

http://health.groups.yahoo.com/group/cbgd_support/join --> you have to be a member to read and post

There are web/phone support groups that meet monthly for those dealing with CBD (patients and caregivers). You can learn about those on the PSP Forum or the CBGD Yahoo!Group.


Sat Apr 10, 2010 5:30 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3338
Location: Vermont
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The link to the discussion a while ago about diagnoses changing from LBD to PSP was really informative and makes me want to pursue this further. I was so overwhelmed and discouraged yesterday that I just wanted to throw my hands up and stop doing any research about all these diagnoses.
Interesting that today I ran into my dad's former dr., the one he hasn't seen since he went into the hospital last year and never came home. I told him how my dad could perform NO ADLs now. He said "he definitely doesn't have AD then. It sounds like vascular dementia." He asked what his current drs. say and I told him the neuro's diagnoses from this week. He just shook his head and said how sorry he is.
Tonight my dad was very aggitated, had about 6 temper tantrums, his speech was very garbled, he had the Lewy Lean to the Left bigtime (I didn't think we'd get him back from dinner without him falling out of his wheelchair). He started complaining that "his butt hurt" right after the nurse changed his dressing on the pressure sore. He has never admitted to or complained about any pain there. I told him that his butt hurt where the pressure sore is and he got furious and told me he doesn't have a pressure sore (he's had it since Dec.) He was almost screaming he was in so much pain, and this is totally new. I asked the nurse for some pain meds and she said she'd give him something that was stronger than the Tylenol, that the dr. had ordered for him a while ago. He was then begging for morphine! Oh boy. Maybe he will at least be happier if they put him on some heavy duty pain killers. I can't figure out why his pressure sore is so painful now and he never had pain there when it went to the bone.


Sat Apr 10, 2010 10:32 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
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Lynn, when the pressure sore was deep, there were probably no living nerve fibers to feel pain. If it is healing, then his pain receptors have probably recovered. It's kind of like third degree burns vs. second degree burns.


Sat Apr 10, 2010 11:24 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
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Not being able to sit upright occurs in many neurodegenerative disorders. It's not exclusive to LBD.


Sun Apr 11, 2010 12:49 am
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
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Yeah, I just liked the onomatopoeia effect!


Sun Apr 11, 2010 7:56 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
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LOL. Yep, 'Lewy Lean' is a lot more alliterative than 'Corticobasal Degeneration Lean'. :lol:


Sun Apr 11, 2010 8:06 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3338
Location: Vermont
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Now that I've done some reading about these new possible diagnoses, I feel like there just isn't going to be a DX that works, and I just need to accept that and go on. When I read about CBD, MSA, PSP, and LBD, he has the symptoms of most of those. What he doesn't have much is hallucinations (not since last summer), no Capgras, and I haven't noticed any unusual eye movements. As far as I can tell he's never had any of the -dopa meds (sorry, I forget all these chemical names) so we don't know if he can take those or not.
I suppose it just is what it is and I need to stop trying to figure it out or I'll go nuts! Lynn


Sun Apr 11, 2010 9:12 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
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Lynn,

I think that's a reasonable conclusion! The fact of the matter is, the diagnosis cannot be confirmed until death anyway.

Your father's dementia precludes MSA.

Does he have RBD (REM sleep behavior disorder)? If not, that's another tick-mark in favor of CBD.

Robin


Sun Apr 11, 2010 9:38 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
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As far as I know he does not have REM sleep disorders, but how would I know if he did? What would symptoms be? A couple of years ago when his walking really became worse shuffling, I noticed he'd get up in the middle of the night and not get back to sleep so he'd read the paper or watch tv. But, since my mom died 12 years ago his sleep patterns changed - waking up early, presumably from depression, more naps during the day.


Sun Apr 11, 2010 9:42 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
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Anyone nearby your father at night would know if he had RBD as he'd be shouting in his sleep or punching or sleepwalking.


Sun Apr 11, 2010 9:51 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3338
Location: Vermont
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He can't walk at all so sleepwalking's out, he can barely move his arms, so he's probably not punching, and his night caregivers haven't said anything about shouting and they are pretty good at letting me what's going on. When he had a cell phone he did wake up and dial some of us in the middle of the night and either say nothing, or he'd be in his "dementia speak" and we couldn't understand what he was saying. He does get day and night mixed up lately - I really noticed that this week when I talked to him on the phone one night. He had a caregiver call me so he could talk, asked me what time it was. I said "it's 8:15 at night" and he said "OMG, you mean it's NIGHTTIME??? I thought it was morning and you were coming soon." (I'd just left there an hour before)
He thought it was night one morning last week when I was there. He can't tell time, even with a digital clock he insisted that I buy a few days ago. He tells me the time is "one hundred and fifty" and things like that! I've gotten way off topic!


Sun Apr 11, 2010 9:59 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
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The confusion about day and night occurs in many types of dementia.

You might consider a "meal clock."


Sun Apr 11, 2010 10:01 pm
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